Tell my children or not?

[Stavia]

Ah same age as my 3/4 sons.
(I'm 4/4 so there is not even a guess about their status)
They are 25 and 28.
The older knew his status a year before me, and I broke down completely when I found out I was 4/4 so my younger one found out then.
What I have done is backed off completely.
They have at least 15 years before the drastic lifestyle stuff would be recommended at our current level of knowledge.
In 15 years there will be heaps more known. They will then be in their 40s. They are currently very well (unlike some other of our members 3/4 kids who are not well)
I don't see the need for them to carry this extra burden at this stage of their lives. Any intervention in their 20s is IMO not that critical.
And the bottom line is, as much as it hurts for this Jewish mother to admit, their lives are their own to do with what they choose.

[hill dweller]

edit

[jeanecho]

My husband and I are both 4/4. We have told both of our adult sons. I have a well established dislike of family secrets. We also have rheumatoid arthritis (husband's dad), psoriatic arthritis (husband), multiple sclerosis (my father and one son), Ehlers Danlos (my mother, me, several siblings, a niece and nephew, and probably both of my sons as well as our grandchild, she is very bendy) in the family. We also have a family tree full of long lived relatives on both sides, even back in the 1800's. My parents did not talk about my Dad's MS. By the time I was 11, I knew he was very ill and my parents did not want to talk about it. When I was 18 I was finally told what was wrong. I immediately, against family practice, told my next youngest sisters who were 15, twins. In the absence of information about an obvious illness, teens tend to think you are keeping some sexual disease a secret. I hate having to keep illness a secret as if it is shameful. I went through this with my own health as well. "Don't tell the doctor about your migraines, dislocating knees, arthritis attacks. If it's preexisting, it will not be treated when you need help." I was told this when I was nine and it is true. It does help that we can point to the fact that every family member who had dementia that we know of, did not obviously have it until way up in their mid to late 80's after some serious health problem like a broken hip or a mild stroke. Most elderly relatives died without dementia. The exception was my father but I think his was more due to 40 years of multiple sclerosis. He had memory loss and mild aphasia, both MS symptoms, but only in his late fifties onward. Some MS patients have such problems starting decades earlier. I wish I'd known about Ehlers Danlos before I had children. I found out I had it in my midfifties. I don't know if I would have had children or not. I knew I'd inherited the buggy knees from my mother but thought I was the only one out of six children. ALso I didn't realize how many of my health problems were caused by one genetic problem, Ehlers Danlos. Two of my siblings were keeping their adult onset symptoms a secret. I didn't know my children had a 50/50 chance of having it until I had reached menopause. I thought it was 1 in 6 because that's what I saw in my siblings. I favor telling.

[Jan]

I'm with you, jeanecho. I'm an inveterate "light-shiner."

[circular]

jeanecho I’m sympathetic to your perspective for sure, while also acknowledging that in some families including my own there may be extenuating circumstances making another approach reasonable. I’m so sorry for the burden of illness your family has bourne. I can see how silence about it all has ended up being hurtful. It’s encouraging to hear that despite all the illnesses there hasn’t been marked dementia at early ages. I wonder if anti-inflammatory medicines for the inflammatory/autoimmune conditions helped stave off cognitive issues. You probably know there are others here with varying degrees of Ehler-Danlos, and/or possibly something else, conceivably inflammatory, that mimics it by causing the weak connective tissue issues. It’s really hard to convey to someone who doesn’t have it how it permeates every thread in the fabric of one’s life. Glad to have you here.

[Julie G]

Waves jeanecho! I wanted to "echo" (pun intended ) Circ's comment that there seems to be an inordinate number of us with Ehlers-Danlos here. I notice that there are others with autonomic dysfunction, fatigue, hernias, etc. who aren't formally Dxed. I strongly suspect that there's an E4 connection yet to be discovered. You've certainly found your tribe with us.

I shared my 4/4 status with my son in a sloppy way as I was so freaked out about my own health. I wasn't even fully aware that I was revealing genetic information to him. He's almost 25 and so busy with his life and career that he's not that interested now, but realizes that he needs to focus on his health sooner rather than later. He was very disabled from age 12-13 y/o with EDS (GI issues, etc.) but has recovered nicely. I try to be a good role model for him... to plant a seed for when he's ready to do something about it.

[hairyfairy]

I sincerely wish that I`d been able to find out my apoe4 status when I was in my teens, before I stupidly got pregnant at 17. the baby was adopted. We have since been in touch, & I warned him about the history of heart disease on my mother`s side of the family, I know that I should also warn him about the possibility of having inherited the apoe4 alelle from me, but I feel too ashamed. He`ll most likely hate me for it the way I hate whichever parent passed it down to me.

[NF52]

I sincerely wish that I`d been able to find out my apoe4 status when I was in my teens, before I stupidly got pregnant at 17. the baby was adopted. We have since been in touch, & I warned him about the history of heart disease on my mother`s side of the family, I know that I should also warn him about the possibility of having inherited the apoe4 alelle from me, but I feel too ashamed. He`ll most likely hate me for it the way I hate whichever parent passed it down to me.

Hi again, my UK friend! I doubt your son would hold something you had absolutely no role in against you. And since any risk he has is decades in the future, he is likely going to benefit from decades of research on prevention. You posted a while ago about possibly enrolling in a clinical study in the U.K., something that I and others have found gives us a measure of paying forward our hope for progress. Any luck in doing that?

I hope your son convinces you also that while you might have been a typical 17 year old, and therefore not always planning for "what could happen", you were and are not "stupid". Hard on yourself, for sure. Maybe it's time to forgive yourself and your parents for what were unintended consequences of being human.

[circular]

Hard on yourself, for sure. Maybe it's time to forgive yourself and your parents for what were unintended consequences of being human.

I second that

[JudyH]

I sincerely wish that I`d been able to find out my apoe4 status when I was in my teens, before I stupidly got pregnant at 17. the baby was adopted. We have since been in touch, & I warned him about the history of heart disease on my mother`s side of the family, I know that I should also warn him about the possibility of having inherited the apoe4 alelle from me, but I feel too ashamed. He`ll most likely hate me for it the way I hate whichever parent passed it down to me.

This makes me a little sad. I know which parent passed it down to me, it was my mother. I am glad she had me despite giving me a tough genetic history that I have battled since I was 14 years old. With some good medical care and a couple medications, It has rarely stopped me from being healthy and active. I have led a good life and have made and am still trying to make contributions to my small universe. My strength and my independence come from the woman who passed this allele to me. I did not know my APOE status when I had my three children but if I had, I still wouldn't have hesitated to have them. They are young adults and out making their contribution to the world.

It would be rare to find a person with perfect genetics and health. You and your son have a place, value and belong in this world.